Quote:
Originally Posted by Nicknerd
Hey guys,
So I saw my thoracic surgeon for a follow-up and he says that he wants to send me to an oncologist to see if I'll need radiation for my old nemesis, the thymoma...He thinks that I should get it because the tumour was so large (he says that in total, it was 9cm  ), that he thinks it'll come back...While I was there, they also ran some genetic tests on me....They're doing some study to see of there's a gene for thymoma and other cancers...
This sucks...I really don't want to have radiation, but I also don't want the tumour to come back...I read that my type usually doesn't come back, but i think that because it was poking through the fat around my thymus, this means that it was 'invasive,' sorta between a stage I and stage II...
For those of you who've had radiation, was it really terrible? How much did you have to have? What was the procedure like?
The only good thing about it is that it really ensures that it wont come back...But I just recently read a study for stage I and II AB thymomas saying that without radiation, the 10-year survival rate is 93% and with radiation, the survivial rate is 96%...So it's like, yeah, do I even need to do it? |
Is that a new study? A year and a bit ago when I was facing this decision the recurrence rate of cancer for those who had thymomas was quite high if not treated and completely removed.
Radiation: Yes it is really terrible. That said, given the same choice again; I'd do it again if I had to. I was in the same state as you (9.5 cm thymoma, just starting to expand past its capsule). I suppose there could be the option of close monitoring for recurrence and do the radiation when/if it becomes needed, but that'd need very frequent xrays and may require radiation and/or chemo therapy anyway.
I had to have 5 weeks, 5 days a week treatment. They didn't tattoo me like they normally do because of the thymectomy scar. Permanent marker and clear surgical tape were used for their markers. You get a vacuum formed pillow configured for you, lie on the table and get burned (you don't feel a thing.)
The radiation therapy
will exhaust you. You will want to be on disability when you start (if you choose to do this). First week was OK, after that I was dead beat tired every day. Naps are important to get through the treatment.
I was burned during the process, throat, chest, back and lungs. Like a sunburn on the chest and back, worse internally. Long term, chest and back are very sun sensitive now, cannot go suntanning (not like I ever did anyway
). My lungs are in rough shape from the burns and the scarring caused plus residual scarring from several pneumonias I've had this year. Pneumonia is a known side-effect of radiation therapy around the lungs... if you develop a cough, don't wait... get it treated early.